Who should I involve?

We suggest you involve patients or carers who are living with the condition/s relevant to your research (as opposed to staff working in charities or members of the public who are not living with the condition you are studying). If your research might be applicable to more than one condition, you could consider involving people with different conditions.

All of the researchers who have helped to write this guidance involved between three and six people. They, and the patients and carers they involved, felt that this was about the right number for a lab based project. Small numbers will enable you to talk with people one-to-one during a lab visit or meeting, and to have in-depth discussions about topics that can seem complex.

Think about whether the people who you want to involve will need any special skills, experience or attributes. We think the necessary experience and attributes are:

• Experience of living with the condition or being a family member of someone with the condition

• An interest in lab based research

If you are planning a face-to-face activity, you may also want to involve people who live fairly near to you (this makes travel cheaper and easier). If you are planning to involve people virtually, you should check that they have internet access.

Patients and carers do not need to have a science background, and they do not need to have any previous experience of being involved in research.